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Second LIFE MAGAZINE

Issue One

Price: UK-£2:40 IRL: €3:20

2010-The year of the life savers..

Transplant Kids, their Stories

Kidney Transplants... What you need to know


Second Life Magazine

27th January 2011

Issue One

CONTENTS

All This months News and Events Page Two & Three:

The Fish that could save your life Page four:

Transplant Kids. their stories Page Five:

Page Six and Seven:

WELCOME

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t’s the first Issue of Second Life Magazine! My name is Maeve the Editor and main journalist of this very informative Magazine! Second Life is all about transplants, from liver to blood, people’s journeys along the way, success stories and the loved ones who have lost their battles but whose memories will live on through their families. We hope to cover everything you could hope to and want to know about organ donation, the registry and of course the transplants themselves. Second Life is working in close connection with www.transplantkids.com who offer free advice and support from the families who have went through it all with their kids, the founder Catriona monitors the forum everyday just to make sure it is safe for everybody and that there is always a friendly ear there to listen. In Second Life HQ we are very excited to get the first issue to press and really hope you enjoy it as much as we have enjoyed putting it together! All credit for the photos goes to google images! You can contact us via Twitter: @MaeveMcKenna or Via our very own Blog that I keep updated with news stories and the progress of the magazine, check it out at: www.wordpress.com/secondlifemagazine.

plant story

Molly’s trans-

Presumed Consent where do you stand? Page Eight and Nine:

Transplant Insight: This Month the Kidney! Page Ten and Eleven:

Page Twelve:

Readers Gallery

Page Thirteen:

Month!

National Heart


Second Life Magazine

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27th January 2011

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THE NEWS HUB

Second Life Magazine

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27th January 2011

Issue One

TACKERS, Transplant Kids Camp 2011

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ACKERS Transplant Adventure Camp for Kids is accepting applications for young ‘transplantees’ to attend. The camp runs from the 19th-26th of March 2011 and is for transplant children aged from 8-15 and sometimes a little older. Tackers bring together children who have had transplants from around the world, to participate in camps where they have the opportunity to meet peers who have shared the same experience. Since Tackers (Europe) was founded in 2002, seven winter camps have been held in Anzère, Switzerland where hundreds of children, from 28 different countries, have participated. The aim is for the children to develop their independence by trying new sports such as skiing, snowboarding, dog sleighing, scuba-diving and para-gliding and to develop a support

network to help their families and each other. The camps provide an environment outside of the hospital to educate the children to comply with their post-transplant medication programme, promote good health and a fulfilling life and most importantly have fun! Camp rebuilds their confidence and shows them and their parents that they can live life independently, like others. It is also a unique way to educate and promote the positive results of organ donation and transplantation to transplant recipients, healthcare professionals and the general public. Our camps also show donor families the result of their “gift of life”. At the first two camps, a race was held in memory of a child whose organs were donated to help others - in 2002, Nicholas Green and in 2003, Thomas Rodin. Since 2004, the race has been held in memory of another child,

Phillip Bates, one of our original Tackers campers... Phillip died in January of that year. They collect the participants from Geneva International Airport on the 19th and take them back and check them in on the 26th. Most kids have NEVER skied before and many have never been away from home. They provide all the ski equipment, accident insurance, 24 hr supervision, all activities, food and lodgings. Camp participation is €350 (roughly $470 or £300) which covers all of the above. Apartments, hotels and chalets are available for any accompanying persons.

“The camp is in Anzere

in the Swiss Alps, our own son Aaron has had the privilege of attending a few times now and loved it, Liz who runs it is amazing,she herself has had a liver transplant,we’ve never gone as a family (simply not affordable to us) Aaron has always gone himself offering him independence & confidence as well as loads of fun wit others just like him who have had a life saving organ transplant!” -Catriona Hamilton


THE NEWS HUB

Second Life Magazine

PageThree

2010-The year of the life savers! More than 1,000 people saved the lives of over 2,700 individuals last year, the highest ever, announced NHS Blood and Transplant (NHSBT) this month. his comes as great news to the thousands of people still on the transplant waiting list, that not only are more and more people joining the donor register but that more lives than ever are being saved. The figures show a 28% increase in deceased donation since the beginning of 2008, when the initiatives behind the donor register launched a campaign to gain more signatures. Lynda Hamlyn, Chief Executive, NHSBT, wished to thank all those involved in making this happen:"Thanks to the altruism of donors and their families, a record number of organs were made available for transplantation in 2010 and a record number of peoples' lives were saved or improved as a result", Today's announcement shows that the initiatives of the last two years are delivering results. It highlights the value of having clinical leads, specialist nurses and Organ Dona-

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tion committees in hospitals, promoting organ donation and removing barriers to make sure it becomes normal everyday practice. "We have worked closely with frontline NHS services to make organ donation a usual rather than unusual event. We will continue with

our work to increase donation rates to save more lives and stop avoidable deaths of patients awaiting an organ transplant," said Ms Hamlyn. hese improvements are based on the implementation of the Organ Donation Task force recommendations made in 2008. This aimed to bring about a 50% increase in organ donation rates by 2013. Dr Paul Murphy, an Intensive Care Consultant in Leeds and NHSBT's National Clinical Lead for Organ Donation said: "All the evidence points towards increasing donation rates through support and

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training for those who care for potential organ donors and their families. NHSBT's work, supported by the UK Governments' Health Departments, has been vital in increasing donation." Clinical Leads, who are mainly intensive care consultants, work collaboratively with Specialist Nurses in Organ Donation, most of who are resident in hospitals. They work alongside hospital donation committees to champion donation and streamline the pathways of potential donors. This helps make sure that more people have their decision to donate fulfilled and more lives are saved through transplantation. Chris Rudge, National Clinical Director for Transplantation said, "The rise in organ donor numbers to over 1000 in 2010, for the first time, is extremely welcome news and a tribute to the generosity of the donors and their families, and they deserve our sincere thanks. ... The need for more transplants remains and I hope that the developments over the past two years will allow progress to be maintained through the coming year."

27th January 2011

Issue One

Gifts for Transplant Kids

Medi Kids Magazine This amazing graphic novel explains organ transplant in a well presented, easy to understand adventure story called "What's up with William?" William is taken on a journey by the Medikidz comic book superheroes off into outer space to Mediland, a living moving planet shaped like the human body, where he is shown by the 5 specialist "body part" superheros how things in his body work,. Including why he needs to take medication & have blood tests done. Visit www. medikids.co.uk for your copy. Priced at ÂŁ6.99.


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27th January 2011

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How this little fishy could mend your broken heart... Who knew that a little Zebrafish could be the key to mending a ‘broken heart’? Scientist’s have begun to create a pill that could repair damaged hearts using a miracle fish protein. This revolutionary and currently experimental method of treatment was discovered when scientists studying the fish realised that they had the ability to repair their own heart. As it stand there is no cure for mending the muscle that gets damaged when someone has a heart attack but it is hoped that this little pill made from protein from the fish could change the lives of all heart attack patients, now and in the future. They have already re-grown mouse organs by adapting the Zebrafish’s unique healing abilities. Now they believe

they can do the same thing for humans and potentially replace the need for transplants. Using drugs containing the fish’s TB4 protein, heart attack victims would be able to repair their damage and re-grow blood vessels and muscles. Experts think they could have the wonder pill ready within 10 years. However a lot funding is needed to make this potential become reality. The Heart Foundation have already launched a plea for help: “We need to spend £50 million to fund groundbreaking research that could begin to literally 'mend broken hearts' in as little as ten years time. Your support can give hope to hundreds of thousands of people across the UK.” To find out more go to: www.bhf.or.uk


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27th January 2011

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Every Issue we will be hearing directly from successful survivors of transplants. And this issue we are hearing from some very brave children who fought the odds thanks to their donors, family and their own fighting spirit. These stories are truly heart warming and shows first hand how much a second chance or life means to these children. Thank you to the lovely people at www.transplantkids. co.uk for getting us in touch with some of their users in order to obtain the stories. Make sure you check out the website for all the stories, fun stuff for kids and of course the forum where you can receive all the support and information you may need!

Emma’s Story...

Hello My name is Emma, I'm 13 years old. I was born with a heart condition called Dilated Cardiomyopathy, that meant my heart was to big and given time would just get bigger and bigger. There was nothing surgically could ever be done, until I got to the point where I would need a new heart to survive. My heart problem caused me a lot of problems: I got tired so easily even after a night sleep, chest pain, palpitations, struggled to eat, breathless constantly, moving around was a constant battle I needed a wheelchair when I was out. I was in and out of hospital all my life. All doctors could do was give me medicines to try and keep my heart as OK as possible. I was living for years waiting to get so ill that I had to have a transplant to get better again. I was listed for heart transplant when I was 4 years old, I waited a year for the call, but I got better myself without a transplant so I was taken of the transplant list when I was 5. I was re listed for heart transplant in January 2008, at this time I was feeling very ill and weak but I managed to stay at home although I was frequently in & out of hospital, although nothing could ever be done. While waiting for transplant I also experienced some emotional trouble, the main one was the fear of feeling well, That sounds strange but because I was born ill I didn't know what feeling well was, like anyone fears the unknown, I feared being well because I didn't know what I was going into. My transplant call came on 1st June 08 my transplant recovery has been a pretty smooth one. I am coming up to a year post transplant I have got a future in front of me and a life I never knew before. Of course none of this could never have been able to happen without my donor who I'll always be eternally grateful to for the gift they have given me. I still take everyday like it’s my last, as I never know what’s coming around the corner.

Olivers Story... I am 14 years old and had a “Living Donor Kidney Transplant” from my Mum 4 years ago (I called my new kidney “Brian” !) I was born with very badly damaged kidneys and at 10 days old (on the night of the Canary Wharf bombing) I was rushed by “blue light ambulance” to Guys’ Hospital in London where the fabulous medical team saved my life. Much of the first year of my life was spent in Guys’ Hospital overcoming major surgery and serious complications. Up to the age of 8 years old the Doctors and Nurses managed to keep what was left of my kidney function high enough for me to survive . This required nearly weekly hospital visits and stays, tube feeding with prescribed formula and lots of medications. The effects of Chronic Kidney failure included not being able to eat, slow growth, lack of energy and almost constant feelings of being sick. Now I’ve received my new kidney I can eat and drink normally and my life has been transformed . However it’s always important to remember that transplantation is a treatment not a cure and comes with some undesirable side-effects and the ever present knowledge that the kidney will reject at some stage (hopefully not for many years to come). Attending the British Transplant Games has always been an awesome occasion, I have taken part in many sports includ ng Swimming, Running, Table Tennis and Badminton, receiving several medals including gold 2 years in a row for Table Tennis. It’s a real honour to be chosen to represent the UK at the World Transplant Games in Australia in 2009, especially as 12 years of age is the minimum age for selection. Oliver


PROOF THERE IS LIFE AFTER DEATH

Second Life Magazine

Molly’s Story

Page Six

27th January 2011

Issue One

Molly Thomas has lived her life in hospitals all over the UK, at the age of 6 months she became seriously ill and for the next 12 years battled with ill health and many different conditions. Now at the age of 20 Molly is beginning to move on with her life and enjoy the future she now has thanks to the wonderful NHS staff and her donor: she tells Second Life her story of survival.

Early years

When I was born I was a happy and healthy baby, with a bright future to look forward to and parents who adored me, the second part never changed, but I did. At 6months old I became seriously ill and my parents brought me to the local hospital, where it was discovered that I had an intussusception of the small intestine, which meant that, my small intestine had scoped in on itself making the blood supply cut off and as a result most of my small intestine died. As I was too ill to be moved to another hospital, I had several operations in the local one and had all but 30cm of my small intestine removed, No-one knows why I had the intussusception. Once I was stable I was transferred to Great Ormond Street Hospital (GOSH) where I was put onto a method of intravenous feeding called TPN, where nutrients went directly into my heart via a central line.

The Terrible twos and The school years

When I was 2 and a half years old some blood clots formed on the end of my plastic central line in my heart. They broke loose and went into my lungs, so I had to have open heart surgery to remove them. That went well and I was then put on a blood thinning drug to prevent the same thing happening again. I grew up with TPN and didn't eat anything orally. My TPN ran overnight every night, so I attended normal school during the days. That was normal life for me as I'd never known any different. Apart from the occasional line infection everything went smoothly. Central lines don't tend to last that long before they need replacing, but mine did really well and one even lasted for 7 years. It had to be replaced because it wore so thin you could see through it! I learnt how to connect and disconnect my TPN at about the age of 8, so was able to become very independent and when I reached secondary school I was able to stay away from home with my TPN for sleepovers. At school one day when I was nearly 15 we had to go outside and line up on the tennis courts for a fire drill. A group of boys in my class started teasing me because they said I looked green. At first this yellow tinge to my skin was only apparent in certain lights, but it gradually became worse. This is called jaundice and can be a sign of liver disease. I also began to suffer from regular profuse nosebleeds because my blood wasn't clotting properly and I became extremely lethargic. At GOSH


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I had tests to see if I had any gall stones because these are a common side effect of TPN and could explain my symptoms. But I didn't have any gall stones and then it was realised I had liver disease.

New Parts for Birthday please?

I was referred to Kings College Hospital where I had more tests to try to discover the cause of my liver disease. They couldn't find a cause, so therefore it was TPN related liver disease. This method of being artificially fed can cause liver disease, but it usually occurs quite soon after being put on TPN, not 14 years down the line! It was explained to me that my liver was too damaged to repair itself, so I'd need a transplant. If I just had a liver transplant I would have to continue to receive TPN which would probably then damage my new liver, so instead I was told it would be best for me to receive a small bowel, liver and pancreas transplant. The liver would replace my failing liver, the small bowel would mean I would be able to eat and would be able to come off TPN and the pancreas was just part of the package. I was almost 16 at this point so was referred to both a UK adult small bowel transplant centre at Addenbrookes Hospital and a UK children's small bowel transplant centre at Birmingham Children's Hospital (BCH). Addenbrookes told me that I would have to wait longer for a transplant at their adult services, so I went to BCH instead. Then I had a rushed transplant assessment because I needed to be placed on the transplant list before I turned 16 as it was a paediatric hospital. I was listed the day before my 16th birthday.

Please Make it good news

At this point I was too ill to attend school so had home tutoring when I felt up to it. I was regularly admitted to hospital for treatment to stop my profuse nosebleeds and blood transfusions to replace the large amounts of blood that I was losing. I was very lethargic and had no energy. I also looked very jaundiced.

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I went home to wait for the call. After 7 and a half weeks I returned to BCH for an outpatient clinic. There the doctors were very worried about my health and thought that if I had to wait much longer I would probably need to be admitted to hospital. I was told that there was a national shortage of organ donors so my wait might be a long one. Just a couple of days later, after 8 weeks on the transplant list, I received the call. At 8am on Sunday 19th November 2006 I went into theatre for a 12 hour transplant operation. Immediately after the transplant my skin returned to its normal colour. I had many complications and more than 10 trips to theatre in the couple of months after my transplant, but things were gradually heading in the right direction. On January 1st 2007 I came off TPN. My TPN had gradually been reduced and enteral feeds (via a nasogastric, NG, tube into my stomach) had been built up to replace the TPN. Eventually 12 weeks after my transplant I was able to return home.

Life as we know it

November 2010 was my 4 year transplant anniversary. When I first came home from hospital after my transplant I was taking over 80 tablets a day. Now I just take around 10. At first I had hospital trips weekly, now I'm seen at outpatient clinics every 2 to 6 months (depending how my health is doing) and have a few tests annually to check for rejection. So far I've had no rejection at all. After my transplant I had an illeostomy to enable the doctors to easily monitor my transplanted bowel, but that was reversed in July 2008, 20 months after my transplant. I returned to school full-time 9 months after my transplant and most of my new friends had no idea I’d been ill. I've gradually learnt to eat and as I've built up my eating I've been able to reduce my NG feeds. Last year I was able to stop my enteral feeds completely


Presumed Consent... The Debate Continues Second Life Magazine

Presumed consent is a debate that has been ravaging for many years in hospitals, parliament and in the homes of many people on the transplant waiting list. This month there has been news that Wales could be the first part of the UK to start using the controversial presume consent in order to obtain organs to save lives. egislation was laid on January 10th 2011 legislation was laid in the National Assembly, which could see Wales the first country in the UK with an “opt-out” organ donation system. Currently, people in Wales must have signed up to the organ donation register in order for their organs to be taken for use in transplants upon their death. However if the legislation is passed, medics would be able to use organs unless the deceased had specifically registered their opposition. But even if a person had not opted out during their lifetime, relatives would still be consulted before organ donation oc-

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curred. The legislation also hopes to protect those of vulnerability, including under 18’s and those ‘lacking capacity’, they will be excluded from any changes.Plaid Cymru AM Dai Lloyd, who tabled a backbench measure on the

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issue before it was taken up by the Assembly Government, said: “This is a proud day for me personally having put forward the original proposals on reforming the organ donation system, but more so a proud day for the Assembly and Wales.“Once again, as we have done on a number of issues, it is Wales that is leading the way and taking bold decisions that will make a massive difference to the futures of so many people. “We know from studies and first-hand experience that there are a lot of people who

would like to be organ donors but who are not registered to do so.“ Moving to an opt-out system will ensure that the number of people who donate increases

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Issue One

and a number of lives are no longer needlessly lost.” Organ donation can cause a lot of controversy, especially in the in the UK with such drastic shortages of organ donors and consequent waiting lists for transplant operations , making it a hot bed for debate. Currently the UK run an opt-in system of organ donation, meaning that in order to donate organs an individual has to sign the organ donor register in order to give consent for their organs to be used again after their death, however the family can overrule this decision if they do not wish for their loved ones organs to be re-used. This very emotional topic has been the subject of debate for many years between health professionals, donor families and patients. Now the British Medical Association (BMA) , politicians


Second Life Magazine

and many patients groups and transplant surgeons are campaigning and keen to see Britain adopt a system of ‘presumed consent’. Presumed consent would see organs taken unless the donor has specifically opted out and stated that they do not want their organs used. This would no doubt increase the about of available organs –research has suggested 25% or more-. In 2009 Gordon Brown and the chief medical officer, Liam Donaldson , both voiced their support for presumed consent, but a taskforce but together and commissioned by the government to research the possibility, recommended that it not be introduced to UK medical legislation. You would think that presumed consent is the answer

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to all organ transplant worries, we are always encouraged to sign up, there is always a need and there is always a lack of organs, so would turning the tables and making people opt out, instead of sign up make a difference? And is it such a good idea?

“We know from studies and firsthand experience that there are a lot of people who would like to be organ donors but who are not registered to do so.“ -AM Daid Lloys I personally believe that it could make every difference;

around 400 people die a year while on the transplant waiting list and if the system is changed to opt-out, the ‘British Medical Journal’ believes that 300 more transplant surgeries could take place a year. All the figures add up that if the system is changed more lives will be saved, and isn’t that what we have the NHS for? Surely it is against our human rights to be denied the right to live, just because one person did not sign up to the donor register does that mean someone relying on those organs should die? I think that the opt-out system could work extremely well and if someone is against donating their organs, through religious or personal belief they have the choice to optout and not donate, surely this

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is the fairest way? It would solve the problem of the lack of donors here in the UK getting those apathetic people who have just "never got round to signing up."And all those against organ donation for whatever reason could still opt out, their human rights unaffected. However for this to work responsibly and not make anyone feel like their body is the property of the state after they die, I believe that the matter should be voted on democratically, so as not to make light of the whole situation, as it is a major ask of people. All in all presumed consent could be a major change to medical legislation in the next few years and I will fully support the campaign to make it legal.


Transplant Overview: Kidney Transplants Second Life Magazine

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ver 1,500 kidney transplants are performed in the UK every year and many more could be performed if more kidneys were available. The success rate for kidney transplants is excellent and higher than for other kinds of organ transplants.

Why you may need a new Kidney

They are preformed for many reasons, kidney failure, or chronic kidney disease being the most common. These conditions slowly break the kidneys functions down till they can no longer do their job of filtering the waste from our blood and turning it into urine. The kidneys contain millions of tiny filters that are known as nephrons. As blood passes through the kidneys, nephrons filter out excess fluid and waste products from the blood.

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These are released from the body when we urinate. However, if the nephrons become damaged, the kidneys can lose their filtering abilities and dangerous levels of fluid and waste products can build up. Kidney failure occurs once the kidneys have lost around 90% of their filtering ability. The two most common causes of kidney failure are: diabetes - the high blood glucose levels that are associated with diabetes can damage the filters in the kidneys, leading to chronic (long-term) kidney damage. And high blood pressure (hypertension) - hypertension causes damage by putting strain on the small blood vessels in the kidneys, which prevents the filtering process from working properly

Donation’s saves lives!

One of the advantages of this transplant is that people can survive with only one kidney and therefore a ‘live donation’ can be carried out, as long as the person willing to gift you the organ is a blood match, on order to stop your body rejecting the kidney. However if live donation is not possible, then you will have to join the waiting list until an organ becomes available for you, This can be a very long wait and dialysis will have to become a regular occurrence in order to sup-


Second Life Magazine

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port the kidney. The transplant kidney provides enough kidney function; remember some people are born with only one kidney and do not develop problems. After a successful transplant, there is no need for dialysis, provided the transplant continues to work well.

The Procedure

The procedure like any operation is risky but has very high success rates and there are very few complications. There are a number of different methods that can be used to carry out a kidney transplant. The most widely used method is known as a Gibson incision. Firstly, an incision is made in your lower stomach, through which the donated kidney is put into place. Your own kidneys can usually be left where they are, unless they are causing a problem, such as an infection. Secondly, blood vessels from your lower abdomen are attached to the blood vessels of the donated kidney to provide the donated kidney with the blood supply that it needs to function properly. Finally, the ureter (the tube which carries urine from the kidney to the bladder) of the donated kidney is connected to your bladder. While the above procedure may sound relatively straightforward, it is demanding and complex surgery that usually takes three to four hours to complete

The Risks

Due to the introduction of newer, more effective immunosuppressant medications during the 1980s, the rates of serious complications that arise after a kidney transplant have fallen sharply. However, kidney transplant, like any other type of surgery, is not risk free. Potentially serious complications arising from a kidney transplant are discussed below. After a transplant, minor infections are common, affecting an estimated one out in two people. These infections usually take the form of: • urinary tract infection (UTI) • colds • influenza (flu) More serious infections, such as pneumonia (inflammation of the tissues in one or both lungs) and cytomegalovirus (a viral infection that can be severe in people with weakened immune systems) can occur, and may require aggressive treatment and admission to hospital. Blood clots Blood clots can develop in the arteries that have been connected to the donated kidney. They are estimated to develop in around 1-4% kidney transplant cases. In some cases, it may be possible to dissolve the blood clots using medication. In more serious cases, where clotting does not respond to treatment, it is usually necessary to remove the donated kidney.

The Recovery Process

After the Surgery the recovery process will begin, the first few days are treated as a wait and see period till your doctors know

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Issue One

if your body has accepted your new kidney. During this time you will be on medication in order to prevent your immune system from rejecting your new kidney. In around 70% of people who have a kidney transplant, their new kidney begins working immediately after surgery. However, transplanted kidneys sometimes take up to six weeks to start working. If this is the case, you will need to use dialysis during this time. Dialysis Patients who have a successful transplant should feel better and have more energy. There may still be a need to watch your diet to protect the kidney. Most patients are fit to leave the hospital a few days after their transplant as long as they attend their post-op appointments in order for the doctors to keep an eye on your progress. For more information please contact your health professional or the NHS online. Thank you to Nurse Lisa- Marie Mckenna who talked us through the procedure in order to give you a little more information. .


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The month of love and the month of the heart....<3 Second Life Magazine

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27th January 2011

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ebruary is the month of love with valentines just around the corner you no doubt see most recognised symbol of love, the heart. However February is also National Heart Month, The British Heart Foundations annual campaign to increase awareness of heart and circulatory disease and also to raise funds to help with research, preventions and care. Congenital heart disease affects about 1 in every 145 births. For more than half of these babies, the condition is a minor problem which either doesn’t need any treatment, or can be successfully corrected with surgery after they are born…but many need a life saving heart transplant. Everybody is welcome to get involved with fund raising as long as its red it goes and we here at Second life head quarters will all be wearing red on the 26th of February for the BHF ‘National wear red day’. There are lots of other ways individuals and organisations can support National Heart Month, from holding your own event to helping promote the campaign in your workplace, school, university or wherever you can. This year is a little bit different as the BHF have launched BEAT, the first ever national heart health code. They are offering an online lifestyle check available from the 1st of Feb, to help you lead a more healthier lifestyle and void heart disease! To help fundraising you can apply for your free pack full of ideas and posters from www.bhf.org.uk. Happy Fundraising!

B E A T

Be Active Eat Healthily Avoid Smoking Take the lifestyle check



Second Life Issue One